Why me? How did I get CP? Why does my child have Cerebral Palsy? Did I do something wrong? Did the doctors make a mistake? What went wrong? These are all questions that I have asked myself or they are questions I know that my parents or other parents of children with CP have asked themselves at some point. Looking for answers to something as life changing as CP is completely natural, even if you may never find the answers that you seek.
Some might say, with some merit, that it is pointless to spend your energy on looking for why, and that you should rather focus on the here and now, and make the best out of what you have been given. And whilst I agree completely that the most important thing is the here and now, I don’t think we should dismiss our need for answers so quickly.
I´ve heard from some parents that they even feel bad for wanting to know why, or that they feel ashamed of being scared of the unknown and what the future would bring. After all, they are supposed to be strong parents, that support their children no matter what, right?
If it were this easy to be human, that would be great, but unfortunately such thoughts, worries and feelings of guilt is part of it all I think. And you shouldn’t try to deny them. The best thing you can do both for yourself and your child is to accept them, and try to find ways to answer them and counteract them, that will strengthen both you and your child.
A while ago I wrote a post specifically about CP and guilt which can be read here. But this post will be about the need for answers moreso than the feelings of guilt, although they may be part of it as well. I am not a parent, and have therefore no personal experience of what it is like, and even less experience of what its like to get told the first time that your child has CP.
Different Reasons for Wanting to Know
I only know about this perspective from talking a lot to my parents growing about, also about their thoughts and fears. And throughout my life Ive had different reasons for wanting to know.
When I was younger (before my teens) it was mostly out of curiosity, but also because I wanted to know more about how I ended up with CP myself, and subsequently I turned to the two people in my life that had the answers to almost all questions I could imagine.
This one however, they had no answer to, nor did anyone else. There was speculations, about there being complications due to me being born 3 months prematurely, but exactly what sort of complications and why those happened nobody knew for certain.
In my teens, my reasons for asking about my parents feelings and thoughts about me having CP changed. I would get angry if they said they felt sad or depressed after they heard I had CP.
Because at the time, my identity and my self image was so closely interconnected with my CP that I felt like they were sad and depressed because they got me, and not some other healthy kid like they had envisioned. It made me feel unwanted and broken in many ways.
In later years however I have a much deeper understanding as to why my parents reacted as they did, and I have only empathy for them in regards to this now. Not because I am ashamed or sad about who I am, but rather quite the opposite. I am happy with who I am, and I have no qualms about my CP being part of me, but I understand at least somewhat the emotional toll it must have taken when I was born, but also over the years.
Some Things Seem More Important at First
My parents have in later conversations with me, revealed that their biggest fear in the beginning was whether or not I was going to be able to walk at all when I got older. To which the doctor at the time replied “Don’t worry about that, thats why we have wheelchairs, what matters more is how his cognitive and mental development compares to children his age, to indicate what sort of challenges he and you will face later.” Seeing it from my own perspective today, I understand my mom, and I agree with the doctor as well.
Walking is considered a normal part of every day life for someone that is able bodied, like my mom and my dad are, and so I understand their wish that I would also walk, as being important to them. But I don’t think neither them nor I view that as hugely important today.
Another big concern of theirs was what would happen if they at some point was not able to care for me for whatever reason, and I suspect some that still lingers today, even though I manage quite well on my own, both with work and living by myself.
My parents were always very protective of me growing up, and still are, even though it has gotten better. I would quite often get angry at their over protection when I was younger, because I felt like they treated me differently, or more like a little child, than what was the case with my peers.
It is a very fine line between caring for your child enough that they feel supported and loved, but also letting them be independent and allowing them to fail. All in all I would say both my parents did a very good job, even if I felt they crossed the line sometimes, I also never truly doubted that they loved me.
I think this is the way you deal with these questions of why really. You may never have the answer to why, but you should not feel ashamed for asking them, because a lot of other people in the same situation have asked the questions before you. And even if you never find the answers you seek as to why, you may find answers to questions like “How am I going to handle this?”, “How do I talk to my child about the CP?” etc. through dealing with each day as it comes, together.
The journey of life with CP or a child with CP is new an unexplored each day, for you, but also for your child, and I think that the answers are best found in mutual understanding, love and patience. Then, over time, certain questions may also seem less important than what they did at the beginning.
This article is part of a two part series of tacking the question of why you or your child has CP. This article is about the parents perspective (although written by someone with CP). The next part in this mini series will be about tacking the question of “why”, as someone who has CP.
As usual, if you found this article useful or helpful in any way, I would greatly appreciate it if you shared it on Facebook and Twitter to help the site grow. 🙂
Also please do not hesitate in chiming in with your own experiences on this subject by leaving a comment below, what questions did you ask, and what answers have you found?